20 October, 2009

Behaviorism and Spoon Theory

Things are still rough but since I've really accepted that and hit the bottom, I've at least been doing some writing and recording music. Which is the only good thing that ever comes out of things being rough. So I figured I should write a blog post, too. I thought I would write about behaviorism and spoon theory.

This summer I interned at a school that uses Applied Behavior Analysis to treat kids with autism. It was a strange experience. If I didn't have an ASD, I'm sure I would have immediately begun daydreaming about working there someday. Most of the instructors are young women with BAs in various subjects, small liberal arts college kind of people, the culture I'm from. It's much more fun and informal than an ordinary school; you're expected to hug and tickle the kids and call them "buddy;" you go on trips to the swimming pool, on the subway; you set up obstacle courses where they can practice social skills. And it's in the city. Being homesick, especially, I've started to think "screw being realistic, I just want to live in Manhattan."

The thing is I could never work at this school because they don't understand spoon theory. I mean, of course they don't, they're behaviorists.

Behaviorism means you only think about what people are doing, not what they're feeling or why they're feeling the way they are. In a lot of ways this is good. Behavior modification is by far the most effective way to treat severe autism, which makes sense because autism and the motivations of autistic people aren't always easy for normal people to understand. And also, I think, if you keep dwelling on Oh No What A Confusing Disability This Person Has, that doesn't really help the person. Teaching the person to do specific things is good both because skills are good, and because getting skills and understanding rules is good for a person. The instructors at the school where I interned had a really refreshing attitude: they hugged the kids, they talked to the kids and each other about how funny, cool, interesting, and nice the kids were, and they expected the kids to improve.

My parents tried to convince me not to go to college right out of high school. They thought I wasn't ready. I like my parents a lot, but my whole life, they have consistently underestimated my skills, and then used my lethargy and behavioral problems resulting from their attitudes to "prove" that I'm not ready for things. (This is why I'm completely dishonest when I talk to them about how things are in the UK--they would overreact, and probably use my current bad experiences as ammunition against me for years to come.) At eighteen, I knew this about my parents and I knew how it affected me. I knew how different, how much happier and more competent I was at summer camp; and even when I wasn't happy or competent, at least I could forget about it by stimming or reading or writing, instead of having my problems amplified by my parents' reactions.

So I insisted on going to college. It was the best decision I've ever made. I went to a big, anonymous place where no one expected me to fail, and I'm not saying I did as well as a normal person, but I didn't fail, and that experience has changed me and continues to change me. I think this could be considered an example of behaviorism, maybe. I knew that action needed to be taken, that physical things needed to happen, for me to improve. Not focusing on how things seemed, but what I did, in a quantifiable sense.

Which is what behaviorism is, right?

But sometimes, behaviorism isn't enough. Especially with kids. Which is where Spoon Theory comes in. Spoon Theory is an analogy created by a woman with lupus to explain what it feels like to have lupus, but people with other invisible physical disabilities have also begun using it, and I think it can also be applied to ASD. When you do Spoon Theory, you imagine that you have a certain number of spoons that you get every day, and it takes a spoon to get dressed, and a spoon to wash your hair, and a spoon to walk to the car, and if you run out of spoons you're really screwed, or maybe you can borrow some of your spoons for tomorrow, but then you're really screwed for tomorrow. The idea is that a person with lupus (or CSF, or ASD) has to think a lot about what they're going to do, and manage their time wisely, because everything is harder and takes more energy. You can't just mess around trying whatever you want. And you have to recharge.

The problem with the school where I interned, I thought, is that they were such behaviorists that they only thought about what the kids should be doing, and never ever about what they were feeling. They didn't seem to think about stress, about how hard those kids were working, and how sounds and textures and those ever-present hugs could really wear on a person with ASD. I think autistic kids who whine and yell and hurt other people or themselves are generally kids who don't have any spoons left and need a break. I think stimming can be part of a good break. But at the school, stimming and yelling and crying and throwing yourself on the floor were just "bad behaviors." Or "non-compliance." But there's no humanity in looking at a child that way! They didn't treat the kids as OMG Poor Disabled Kids, which was good, but I felt like they often just ignored that these were kids with really different brains. They would talk as if the kids were stimming for attention, that the kids were trying to be manipulative when they cried or complained. AUTISTIC PEOPLE ARE NOT GOOD MANIPULATORS. PEOPLE WITH SENSORY TROUBLES HAVE A LOT TO COMPLAIN ABOUT.

When I was in middle school, I would come home from school and get on the Internet. Which would result in my mom descending on me and telling me how "addictive" my behavior was and how I should instead come home and start doing my homework right away. But school was exhausting. It was crowded and loud and people hurt me and it was hard to understand what to do. The Internet was always easy and fun. I wanted the same, simple, good thing to be waiting every day when I came home, so I could make it through the day. Or you could say: when I came home I was out of spoons. But my mom just saw it as bad behavior.

I could never work at the ABA school in New York, not only because I'm offended by their attitudes, but because I had to sleep and stim so much to get myself able to go there, because I knew that it wouldn't be acceptable for me to curl up in my chair or rock or flap my hands or take my shoes off, because it would be considered bad behavior. Or the adult version of bad behavior which would mean unprofessional or maybe taking drugs, I don't know, because they didn't know spoon theory and they wouldn't have room for the idea that people do this for a reason.

I guess I don't have a super succinct conclusion to come to about the intersection of behaviorism and spoon theory. I think that a positive attitude that focuses on quantifiable achievements is really important for helping ASD people. But I think that professionals and parents have to try to understand how we're feeling, too, and when they're working with someone who can't communicate easily, they must not assume that "bad behavior" means laziness or meanness or inability to do the work. Sometimes it just means not having enough spoons.

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